Mantra for a Broken Baby

That sounds frightening, I suppose. But it isn’t. Or at least it isn’t as frightening as it might be. The haunted places inside me are at once beautiful and terrifying—illuminated, fiercely.

When I close my eyes I find those luminous places that ache and bleed words when I press against them.

It wasn’t always this way, of course. There was a time before I polished these spots until they sparked to life. There was a time when I tried to cauterize the flood of words. There was a time when I closed my eyes and saw only darkness. And a time before that when I saw only blinding light, which is its own kind of obscurity.

When I close my eyes I see that it is possible to make the most painful things the warm glowing light inside you.

***

If you say the words over and over enough they lose their meaning: “When she was three months old my daughter had cardiac and respiratory arrest.”

When she was three months old my daughter had cardiac and respiratory arrestWhen she was three months old my daughter had cardiac and respiratory arrest

Like any mantra, however, they also gain their meaning in repetition. We breathe in and out the things we tell ourselves. This truth animates the inside of me reverberating intertwined messages of gratitude, and fear, and awe.

She lived, she lived, she lived.

And: What if, what if, what if…

And: What’s coming, what’s coming, what’s coming…

My being is altered by this mantra. It is inescapable. My blood pounds out its rhythm. My arms still remember the weight of her tiny limp blue body as I walked through the doors of the ER.

It was just the beginning of her story. Just the beginning of doctors and hospitals and mantras. Just the beginning of an abyss of love and fear and pain.

***

I have made my home in those haunted places inside me. Lit comfortably in deep warm light and long shadows, I feel like I understand all sorts of truths that eluded me in sunlit time before the dark, their details burned out in the bright light of before. These same truths I dodged in the darkness after, truths I found in the dark as I slid my fingers over them, whispering to them as I learned their crevices, and textures, and sharp edges.

I learned them until my fingertips—blistered and bloodied—and my wavering voice worried glowing life into them.

***

This is the place that I retreat to when I cannot stomach another photograph of another five-year-old. Another perfect 20-week ultrasound picture. Another night listening to my neighbor’s children running and shouting. Another three-month old whose breath does not come in thick and raspy catching in her fluid-filled lungs.

This is the place I retreat to when I cannot hear the words of another parent wrap around to complain about their child—however good naturedly. “He never shuts up,” they say. “Sometimes you must be happy she doesn’t speak.”

This is the place I retreat to when I field the unfounded worries that others seem to think I will understand. “I know it must be hard. Parenting is so hard. I’m constantly afraid she’ll have a brain tumor or something.”

This is the place I retreat to when I see the proud naïve smile—the mirror of my own smile five-and-a-half years ago—dancing on the face of the rounded fertility goddess who cannot imagine, cannot fathom that life would hand her a fragile baby. A damaged baby. A broken baby. An imperfect baby. “Did you know?” She asks, urgent for my reassurance. “Did you know before she was born?”

This is the place I see reflected in the eyes of others who cannot help but understand about the things that other people pretend don’t exist. Strangers, still we recognize each other’s battle scarred insides. We nod to each other’s blazing caverns of anger and vulnerability and strength and truth. And fear.

Always that fear.

We are a tribe that knows things about fear.

About how it can haunt you if you let it. But we are the tribe that knows how you can inhabit it. How you can step inside and breathe life into it. How you can claim it.

How if you whisper to it in the darkness and run your hands over it, you can haunt it.

***

When I close my eyes I see the lines of my daughter’s body, now five years old.

I feel the weight of her slight frame in my arms.

I hear her whisper the words I long for her to speak.

I taste her skin pressed to my lips.

I smell her breath, sweet and sleepy.

My daughter is there always when I close my eyes. Her inside of me, as before.

She whispers to me, Maman, like this. She guides my hands in the darkness, teaching me the lines of her fear. Or is it my own fear? For her? Of her?

When we find the spot, words appear, bleeding a stain onto the floor, running downward, deeper into the darkness. She steps forward and looks back at me to follow.

I am a writer, consultant, and non-profit founder. I am also the mother of Esmé, a beautiful little girl who has multiple rare genetic disorders. In addition to writing The Cute Syndrome blog about all of amazing, adorable, and terrifying things Esmé does--I also spend my time running the Cute Syndrome Foundation, dancing to Yo Gabba Gabba, talking about rare genetic disorders, and taking boxing lessons.

Other interesting things to know about me? Once I dressed up an $8000 pieces of medical equipment like gorilla so Esmé could be Dian Fossey for Halloween. And I have a doctorate in communication and rhetoric--which is good for mediocre wall art and the occasional Aristotle joke.

My first short book, Around and Into the Unknown, is about our journey through Esmé's DNA. My second short book, Whoosh, is about Esmé's cardiorespiratory arrest. My writing has also appeared in the Huffington Post Parenting Blog, the New York Times parenting blog Motherlode, and The Mighty, among others.